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titaniumed
05-30-2013, 02:11 AM
Ok, One for recovered patients....... I don’t start too many threads anymore but this idea came up while I was responding to an e-mail.

For full fusion patients that were operated on more than 1 year ago. How do you feel you “adapted to your limited mobility” on a 1-10 scale? 1 would mean that you didn’t adapt well and are totally struggling with it, 10 would mean that you are as pleased as you can be with your mobility given the circumstances. Patients that are healed have stopped bumping their heads in the car by now so you can understand why this pertains to patients that are basically done with their recoveries. (1 year or more)

Please state if you wore a brace at any point because I believe that this does help “expectations” of limited mobility after a full fusion.

Don’t worry about how many levels, just state what levels are fused if you answer. This is more about mobility, not about pain levels.

People ask me what its like having a full fusion all the time and I just feel that this thread would be a good resource for those considering this route.

Thx
Ed

JenniferG
05-30-2013, 05:33 AM
Hi Ed,

10. I think I've fared far better than I expected. It's been a couple of years since I last bumped my head getting into a car! (I'm so glad I'm not the only person to do that!) There's nothing really that I can't do, only things I'm advised not to do i.e. running, lifting over 10 kilos.

I'm fused T4 - S1 with pelvic fixation.

I didn't wear a brace at any point.

I have no pain.

I have fingers, toes and eyes crosssed that I can still say this in 10 or 20 years.

golfnut
05-30-2013, 10:05 PM
I could almost say "ditto" for Jennifer's post.

My surgery was Jan. 5, 2011. I would give myself a 9 or 10 at this point, but it would have been about a 7 at a year. I am fused T4-sacrum with pelvic fixation. I never wore a brace before or after my surgery. During my first year post-op, I could not even imagine being able to play golf halfway decent ever again. In my signature, I have a video of my swing (pretty slow) during my first round of golf at 15 months post-op. Just yesterday, my golfing buddy told me she couldn't believe how much better my swing looks this year than last summer because of more flexibility and club head speed. I have no complaints with my mobility. Zumba moves aren't so hot, but I feel like I do well with my tap dancing.

Confusedmom
05-30-2013, 11:13 PM
Only 14 months post-op here, T4-sacrum. Hmm. 7? It's getting better all the time. Just in the past few months I have been able to put shoes and socks on without assistive devices, shave with a regular razor, and clean house (read: pick stuff up off the floor) without a grabber. Part of it is that my legs are stronger now, so I can squat easily. And part of it is that my restrictions have been lifted, so I'm not as worried about "bending" a little bit at this point. I don't really bend, of course, but sort of lean over things--like when making the bed. Doing the laundry and driving don't bother me anymore. I can carry laundry baskets and push a full grocery cart again. I have even been able to get underneath a desk attached to the wall and clean up pet messes on the carpet! Where I still need help: loading the bottom rack of the dishwasher. I still sit on a cane chair to do this if I have a full load. Also my biggest complaint that you've all heard 1,000 times: I still can't walk fast enough. I walk fine as far as my gait and appearance; it's just difficult for me to go fast enough to break a sweat. I feel like my stride is just difficult to extend, and if I try too hard, it hurts. I am hopeful that in another year or 18 months I will be able to give this thread a "10."

Evelyn

Confusedmom
05-30-2013, 11:14 PM
P.S. I didn't wear a brace with the surgery, though I wore one in adolescence. Also, I had very clear expectations of what this would be like. And, aside from the slower walking, it has been what I expected.

titaniumed
06-01-2013, 11:58 AM
Thanks for the replies....but we need more on this study! (smiley face)

Ed-10
Jen-10
Karen-9-10 10 on a good golf day.
Evelyn 7 14 months post....still need time.

I know people that have not adapted well.....I hope they post at some point. I suppose I could dig for their posts from years ago....

We want this to be realistic for decision making.

Keep em coming....

Thx
Ed

JuliaAnn
06-01-2013, 02:05 PM
Thank you for this thread. It brought tears to my eyes, just for the hopefulness it affords. I had ZERO clue what I was getting into when I got surgery last fall. I didn't go into it as an option. I got the surgery because my scoliosis collapsed so much that my back literally broke. I never even asked Dr Hey would he would be doing. When you're broken in half, you seriously don't care what they do. In the hospital, all the staff entering the room saw my x-ray on the window and said "Wow, you really had a major surgery!" I'd never had any surgery before so had no idea what they meant. The physical therapist who came to work with me for the first three weeks said he'd never worked with someone with such a big fusion. I had no idea what to expect and never had a choice. I was just thrilled that I never had to fear collapsing pain or breaking again.

Now at 8 months, it's all sinking in. I am fused from T1 to S1 with pelvic fixation. A couple friends have wondered what's taking me so long to get better. For months I was frustrated and wondered the same thing. But I'm finally realizing what "major surgery" was. This isn't a fast recovery but it is a really good long term situation.

At 8 months, now that I am more mobile, I have more pain. I've been very protective of my neck, especially while driving, knowing that turning my neck now puts a lot more strain on it than when I had more vertebrae to work with. But overall, I am greatly encouraged. It has been critical to keep my legs, especially thighs, really strong. I've also had to work more at keeping my shoulders flexible because I no longer get involved in activity that uses a lot of arm and shoulder movement, such as gardening. So I have to do exercises to keep fit that which normal living used to keep fit.

Thank you very very much to those who are posting here. I've looked all over the internet and it's hard to find testimony of those who have really big fusions.

Susie*Bee
06-01-2013, 03:30 PM
Ed-- this is a toughie, because we can't ever return to the times when we rolled around on the floor playing with our kids. Even then I remember some tough back times. But those "floor rolling" times ended for me long before surgery. That ended and resulted in the surgery... JuliaAnn made me take time out in a very hectic schedule right now, as I'm feeling selfish with my time. I think most of us LOST some capabilities because of the scoliosis at some time or other. Maybe not the flexibility, but some of the other things others take for granted. I couldn't carry a 9x13 dessert in a glass pan to school any more, for Pete's sake. It weighed too much. (Of course, it still kind of does...--I take cookies on a plastic plate instead.) But by the end of the day the gravity pulling on my spine had given me that crushed and ground painful sensation. I called it ache-iness, but looking back, it was outright pain. I have a high pain tolerance.

I am now 6 years (whoopee!) post-op, wore a brace for 5 months, fused T2-L4, and can do a lot of things that I want to do. I can pick up my grandsons for a tiny bit (they are 4 years old), but they can sit on my lap. (big smile) as long as they want to! I work full time (school year) as a school librarian and can manage all the shenanigans that come with K-5th graders all day long as I teach them, including lunch and recess duties, I can have all my grown children come visit for a week at a time and prepare meals and survive (whew!), and I mostly relax in the evenings because I get worn out by the end of the day.

My husband does not like me to do anything that might compromise my lower vertebrae, but I always tell him he has NO IDEA what I have to do at school. However, since he wants to do some of the housework, that is fine with me. (big smile), so he changes the sheets and does the vacuuming and mopping so I don't have to twist (I am not supposed to). I enjoy life to the fullest and love everything about it. I have bitten off too much at the moment and am directing our Vacation Bible School that starts in 2 weeks, a large undertaking-- so soon after my other school finished, and my daughter and son-in-law from Texas are arriving tomorrow. I would like someone to examine my head the next time I go to the doctor because I think there is something missing that used to be there. Oh, right-- of all the things I've lost, I miss my brain the most. Ha ha. HOLP! (Any Trixie Belden fans out there? That's what her little brother used to say...

For being 62, 15 vertebrae fused, listhesis, lamenectomies, etc., I feel blessed and full of life and vigor even if I am not the outside playing ball type. Oh, right, the kids at school think I am pretty good at some stuff. They know I am fused, but they forget. I am alert, energetic (till I get home) and I praise God that I don't have to worry about my back collapsing. JuliaAnn, it took 3 years and counting for me to keep getting better and better and I'm still getting better each year. It's a process. Some jump back immediately, some of us take our time. But hey, we are all doing what we do. We end up getting stabilized and hopefully that is that. Rank me fairly high, Ed. Maybe an 8??? (CHANGING-- I was thinking you meant can do-- I've adapted to a 10.) I don't know. I'm happy as a clam, unless you're quoting from The Walrus and the Carpenter-- oh, except those were oysters. I think I am a bit slap happy. You take care. Tee hee.

PS-- JuliaAnn-- I remember people from my church asking me "what went wrong?" when it was taking me a long time to recover. You just have to grin and bear it and explain it's the kind of surgery that takes a long time to recover from. You had total reconstruction of your spine. It's the same (about) as being hit by a Mack truck. You have to start from ground zero...

jackieg412
06-01-2013, 06:45 PM
Hi to all,
I can't assign a number to this yet. It has been a few years since my last surgery ,but my spine was built at different times. Ist was t10-pelvis, 6 days after surgery I fractured through t9, Then I had c5,6,7 fused and the t1-t10. My rods are joined at t9,10,11 area. I am more careful because of that.
I find some things require different approch.And like Susy Bee I can not roll around with the grandchildren. My least favorite things are the car,getting dressed,opening heavy doors and walking on a windy day.{It makes me feel like a kite!}And I live near Chicago and it is windy a lot.
I cannot assign a number yet--there is a reason for this,but maybe soon.
Thanks Ed for the topic!

titaniumed
06-01-2013, 11:30 PM
Now at 8 months, it's all sinking in.


Well.....this is why I started this thread. To help others realize that scoliosis surgery is in a class of its own and can’t be compared to many other procedures......Its serious stuff, and it’s a life changing procedure and process. “Adapting to mobility”, the title of this thread, covers just what it means. It might be the first question that arises in everyone’s minds, but covers just a small understanding of what long fusion surgery entails.

A good friend of mine had a fake aorta installed around 10 years ago and he recently came back from Hawaii for a mainland visit. He informed me that he needs more surgery because of ADHESIONS from his massive anterior, Similar to Karen Ocker’s testimonial.... I never KNEW about this and I consider myself fairly active in reading about scoliosis and its complications.....after all, its my disease......Karen, we hope your ok.

Sometimes we have no choice and we have to do what we have to do because we are at the end of the rope.... There are others that are not quite there yet, that CAN take the time to get themselves prepared. I know its hard for us to try to “grasp” all of the medical lingo, but its almost a necessary thing if we really want to be prepared for what’s around the corner as we age.

For seasoned members that have “been there, and done that” these testimonials are of great value to other scoliosis sufferers that are out there......active posters or not. I can also imagine not being able to assign a number Jackie, for some like you, revision patients, the process can continue for reasons we have no control over.

I almost burned my steak writing this post......but I don’t sweat the small stuff anymore (smiley face)

Ed

susancook
06-02-2013, 12:18 AM
PS-- JuliaAnn-- I remember people from my church asking me "what went wrong?" when it was taking me a long time to recover. You just have to grin and bear it and explain it's the kind of surgery that takes a long time to recover from. You had total reconstruction of your spine. It's the same (about) as being hit by a Mack truck. You have to start from ground zero...

I am 2.5 months postop and people of course have not asked me why I have not recovered yet....but when they see my brace or walking stick and ask, I show them my postop xrays on my cell phone. They usually say, "wow" or "How do you do anything?" The problem with our spinal surgeries is that our massive surgeries are invisible...unless you are at a nudist beach and then everyone could see your war wounds. Maybe I should go this summer and see the reaction!

So, when someone asks, show your xrays!

Susan

susancook
06-02-2013, 12:25 AM
I was ready to start a thread and saw Ed's [hope it's OK with you, Ed] and decided that my question was OK here since it seemed relevant to the thread.

I am 2.5 months postop and wear a brace almost all day. When I do have it off, I sometimes "forget" my restrictions and will bend a little or twist a little and am amazed at how flexible I really am....I guess that I assumed that when someone was "fused" that you were stiff and sat up like military straight and had zero flexibility. I know that I am not yet fused, but when I am, what kind of range of motion can I expect?

Also, HOW LONG DO PEOPLE USE THAT TONG EXTENDER FOR BUTT HYGIENCE AFTER A BM? Can I ever reach that far?

Thanks, Ed for starting this thread. I am feeling quite hopeful in reading it!
Susan

titaniumed
06-02-2013, 01:20 AM
Susan

I do have my mobility thread in my signature with some photos of me twisting and bending....Check it out.
That thread covers me, this thread covers everyone with a full fusion......so if anyone has photos or videos of mobility, by all means, post them.

Suzie Bee and others constantly remind me of things I would never think of......this proves the value of the forum....information that doesn’t get covered in any books hopefully get covered here.

When will Dr Hu release you from the brace?
When she does, she will probably have you just wear it when you leave the house. Remember, try NOT to fall. That should be a priority.......

It takes 12 months for bone to fuse......plus or minus about 9 months dependent on age and body chemistry. This is also not guaranteed and fusion mass can be as hard as a rock, or end up as soft as cheese cake.....disrupting this fusion process too early with a fall is like hitting your finger with a hammer after you put the band-aid on it. We know that doesn’t work too well....

I healed at a rate of approx 10% per month. That’s the easiest (adult age 50 formula) to remember....If you are 2.5 months, figure 25% plus or minus 10%. I was still VERY delicate at 2.5 months.....just walking short walks often and sleeping often. I hardly left the house for the first 3 months.

Ed

susancook
06-02-2013, 04:58 AM
Susan

I do have my mobility thread in my signature with some photos of me twisting and bending....Check it out.
That thread covers me, this thread covers everyone with a full fusion......so if anyone has photos or videos of mobility, by all means, post them.

Suzie Bee and others constantly remind me of things I would never think of......this proves the value of the forum....information that doesn’t get covered in any books hopefully get covered here.

When will Dr Hu release you from the brace?
When she does, she will probably have you just wear it when you leave the house. Remember, try NOT to fall. That should be a priority.......

It takes 12 months for bone to fuse......plus or minus about 9 months dependent on age and body chemistry. This is also not guaranteed and fusion mass can be as hard as a rock, or end up as soft as cheese cake.....disrupting this fusion process too early with a fall is like hitting your finger with a hammer after you put the band-aid on it. We know that doesn’t work too well....

I healed at a rate of approx 10% per month. That’s the easiest (adult age 50 formula) to remember....If you are 2.5 months, figure 25% plus or minus 10%. I was still VERY delicate at 2.5 months.....just walking short walks often and sleeping often. I hardly left the house for the first 3 months.

Ed

Thanks Ed! Great info. The best part of this forum is the variety of experiences and the "handy tips" for getting though the day with limitations.

Dr. Hu advises wearing the brace for 6 months, now [at 6 week checkup], I was given a break of 20 minutes 3 times a day. She probably increases the time off progressively....I made that part up, I'm just hoping that she does. In truth, I like it as I feel protected.

I call my brace "Hot and Holey" as it is sweaty inside and I had them drill holes in it for heat relief [he said that it would not make a difference, and I don't think that it does, but it surely is stylin'].

Irina always tells me to be patient, and I tell her that I feel like that vulcher on the perch who says, "Patience, my ass, I'm going to go out and kill something". I am tired to being limited and asking for help. I am an impatient patient.

I will be 67 in August and although I do not have osteoporosis by hip measurement, when I fractured my ankle, the surgeon said that my fibula was osteoporotic and Dr. Hu had to use hooks in some of my thoracic vertebrae as they were osteoporotic. Unsure where my age and bone status fit into your formula, but I'm thinkin' that my fusion will be between 1-2 years.

I have not fallen but that definitely scares me. I use a walking stick for stability. I wear my brace all of the time when walking.

Again, thanks for support and information. Susan

debbei
06-02-2013, 08:37 AM
It's almost 5 years since my surgery, fused T3 to L3. On Ed's scale, I would give myself a 9. There isn't anything that I WANT to do that I CAN'T do. Of course, I'm not the adventurous type like our friend Ed :)

If I explain my spine to someone new at my zumba class they say they are amazed that I'm fused as I am. For the first couple of years, I was very careful with everything I did and was conscious of my movements. But now, most of the times I forget about it myself and just do everything naturally. The fused state becomes the new normal. I even amaze myself sometimes thinking....wow I don't believe I just did that.

golfnut
06-02-2013, 12:04 PM
Susan,
I know it's hard to be patient, but when you look at the big picture of a fused, straight spine for the rest of your life, it's so worth it. I would advise not bending or twisting at all for many more months. This is a crucial time for your vertebrae to fuse, so be very careful. I used the extender for wiping for probably 6 months or more and the razor with the long handle for a year. Look at the video in my signature if you want to see my mobility at 15 months. I couldn't imagine being able to do that during my first year. Now at over two years post-op, I know my swing shows more speed and a bigger turn. I don't have any pain during or after golf. You will be amazed at the improvements even after two years.

jrnyc
06-02-2013, 12:41 PM
TiEd.....your PM box is full...

Karen...i just watched your golf video again...and again...

and what i immediately thought was...

i SO wish there could be a buddy system...
.....just for one day...
for a post op fused to sacrum person to spend a day with
a pre op person who needs the same fusion...
just to see daily activities...
maybe with golf, maybe not...
but mainly to watch a person who is fused to the sacrum and two or more
years away from surgery....
because some of us....or i will speak for me...
i... am amazed at what some post op sacrum folks can do,
and i do not believe it...til i see it...
it would be so nice to be able to see it up close!

hope you can golf today...
it is hot and sunny and beautiful out today in northeast
jess...and Sparky

golfnut
06-02-2013, 01:46 PM
I know exactly what you mean, Jess. I just could not in my wildest imagination figure out how it would be possible to play golf again, even at a much lower level than I was used to playing. I had played in competitive golf tournaments before my surgery and I am doing it again and even won one last year (1st picture on Photo Bucket) Before I was allowed to golf again, I corresponded with Rich, from the forum, who had returned to golf and was very pleased but his golf game, however, his fusion started at T9. I even begged Ed to try to hit a ball to see if it was possible for someone fused T4-sacrum to actually make a full swing. I couldn't be any happier with my surgery and I'm living life to the fullest doing absolutely everything physically that I want to do with minor adaptations. I don't lift heavy objects or jog. I work out at the Y, tap dance, play golf, ride my bike, work in the yard, vacuum, wash windows, etc.

I keep my fingers crossed that I have no complications down the road.

Give Sparky a hug from me. I hope he does well with his surgery.

Irina
06-02-2013, 04:30 PM
Thank you for starting this thread, Ed. It's very reassuring to hear from people one year plus. My doctor allows me now to put on socks without sock aid and I thought I would have no problems doing it. Boy, was I surprised that after several days of attempts I could barely manage to put a sock on my left foot, but can't even get close to my right foot. Did other people also have problems putting their socks on initially (I mean without sock aid)? I am fused T6 to sacrum.

rockycarm
06-02-2013, 06:50 PM
Hi All,

So glad to respond to this thread. I have just passed my 1 year anniversary and so thankful I am where I am today. Surgery was T9-S1 and despite a numb right toe I can still give myself at least a 7 as I can walk, do everything for myself except for picking up very heavy items, I work f/t, drive, bend at the waist, can pick up things off of the floor. i am 2.5 inches taller, have a waist again and am not in pain. Do I do things different? Absolutely. I am still very cautious and look forward to my visit with the doctor on 7/1 hoping that he is going to tell me I am fused. Sitting for long periods is still a problem at times as I get tight in my legs and coccyx aches. This goes away with walking. I am so happy the warm weather is here and I can get out and walk more. Stay positive everyone - remember what it felt like before. I am hoping you are all better off now than before even though things may be different. I love to come on here and see how everyone is doing and it has truly helped me over the past 18 months before and after surgery. So best to all!!

jackieg412
06-02-2013, 07:14 PM
Hi debbei,
I see you are fused to L-3---I think the people fused to s-1 and pelvis have less range of motion. It reallt impacts bending. Since my spine was built in stages with the t-10-pelvis first,then cervical and then thorasic. On the last one I noticed how much harder it was to reach for anything. I am short and always reaching for something. It is harder to tie shoes--mine are always tied on the side!
All of this being said--I lost mobilty piece by piece. Also since my rods are joined{because of revision} I try not to stress them too much.
I am always addapting somehow and trying to do most things. Right now I need some painting done---I just do not know how I will be able to keep looking up. Maybe because of the fusion in the cervical. I am not as fused as Melissa, but very close. I can look up--but not use my arms at the same time. I can reach up--but not look. It is rather hard to paint like that,, Any Ideas?
Thanks to all!

Confusedmom
06-02-2013, 09:00 PM
To answer a couple of specific questions, Irina, I used the sock aid for almost a year. I didn't even try to put socks on without the aid until recently. When I finally tried, it took a few days to get more flexible. Now it is relatively easy. I still don't tie shoes, though. I use elastic laces in anything that needs tying, so I can just slip them on. To be clear, I COULD tie them; it's just easier not to.

Susan, were you the one who asked about the tongs? I really hated them, so I found a way to work it out with just the slightest squat (not breaking 90 degrees). Try wiping from front and back; see what works for you. I did stopped using them early--I'd say within the first couple of weeks, possibly.

Whoever was saying that people don't understand because they can't see our metal is totally right. Even my closest friends are surprised when I tell them I still can't walk quickly. Even my husband forgets that certain things are difficult. I don't know how many times I have had to remind him it hurts when he pats my butt!!

On an unrelated note, I am at a beach vacation this week and very proud of myself for being able to swim with my kids, walk in the sand, lie around on floats, and even get down in the sand and help build a sand castle! Also, no problems with the flight or sitting at restaurants!! (Hint from my physical therapist: always wear a jacket or sweater on planes; then you can fold them and put them behind you for lumbar support.) :-) Also, my scar is really fading, and I haven't had a single person ask about it!

Hey, has anyone else noticed they float more easily post-fusion?

Evelyn

Confusedmom
06-02-2013, 09:06 PM
Jess,

Surely there's someone from the forum in your area you could meet? I met three people from the forum who were fused to S1 before I took the plunge. They all looked very normal and just like they had good posture. It reassured me quite a bit. One was Karen!

Evelyn

titaniumed
06-03-2013, 01:50 AM
Wow! We have a bunch of posts here and everyone seems to be doing just fine with things.....adapting as we go, I guess.

Once again, I really hate to bring this up, but there are scolis that are out there with low numbers or scores that have not posted....I know a few and it really sucks, but the whole purpose of this thread was or is to cover ALL scenarios for those making their decisions. Accepting the fact that complications can happen, and even though it’s a small amount, they don’t matter unless it happens to you.
I learned that one from Linda.....and it really stuck......These posts are here, there not many but they are here on NSF and the SOS forums.

For those considering surgery, please remember that its irreversible, once its done, its done. The list of complications on spinal surgery is a long long list and even though we have to install our blinders walking into these surgeries, there is that element of risk....

Some of the people that have had a bad run of luck don’t post....Maybe the pain is too bad for them, or maybe they feel that they might have been cheated, but your also are part of the scoliosis community and your posts are always welcome.

For those revision patients that have done battle, you are examples of what I’m talking about, and are in our hearts as you continue on trying to get things right.....

Attending your local scoliosis meetings is a great way to “meet and greet” with all scolis, young and old, unfused and fused....I never thought of attending one before my surgeries, but have gone to a few and they are valuable resources in your decision making process.

Karen, I remember driving those golf balls while you were recovering....remember I felt as if full fusion was an advantage due to the stability? I’m so glad that your happy with the way things worked out. If we ever play, I want to warn you, I like to use exploding golf balls for entertainment value. (smiley face)

Irina, I wasn’t even close to putting on socks at 3 months without the sock installer. If you have permission, do your stretches slowly because it can trigger soft tissue injuries that can really be painful. I used a stool with one leg up, and leaned and hung my arms for the stretch. Pulling down reaching for toenails can trigger an injury.

Ed

mabeckoff
06-03-2013, 06:18 AM
Ed,

I am sure that I am one of whom you speak that have not posted.

I am afraid of scaring people

Melissa

jrnyc
06-03-2013, 09:47 AM
Ev...if anyone who is fused to sacrum lives in CT, i have not heard
of them....???????????????

jess

JenniferG
06-03-2013, 07:10 PM
Irina, I'm another who couldn't easily put socks on at 3 months. It was more like a year before it became much easier.

Jess, I wish I could hop on a plane and come spend a week in Ct. You could throw whatever you could think of at me to do. I'm sure you would have so much more confidence if you were to see what is possible for me now. Seeing is believing.

And that's not to say everyone has a perfect outcome. After reading these forums for years, I know that sadly, that's not the case. The good thing is, skills, experience and techniques are improving all the time.

Confusedmom
06-03-2013, 09:58 PM
Jess, Can't you meet someone in NYC? Surely some of Dr. Boachie's patients must live around there. There is a possibility I'll be there in the fall. I will let you know if I will be, and you can come meet me! I used to live in Bronxville, NY, btw. Can't be too far from you!

Yes Ed & Jennifer, I also have met two people who had major complications. One developed flat back syndrome and couldn't stand up straight easily. She had to have a revision surgery. Unfortunately, that resulted in a pseudarthrosis, and surgery number three. I think she's doing well now, finally. The other person doesn't have mobility problems per se, but her nerve pain, which did not exist before the surgery, is so bad that she cannot be out of bed (upright) for very long at all. She has had to quit her job and finds it difficult to do activities with her kids or travel. I think people in these situations sometimes don't post because it depresses them to read posts about everyone moving on and getting better when they are having such a difficult time. I wish they would post more so people considering surgery could get the full picture.

jrnyc
06-04-2013, 12:06 AM
Ev, of course i would be willing to meet anyone
in NYC who had fusion to sacrum....
i would go into the city just for that, if need be...

surgeons put me in touch with post op patients on the phone...
Dr Lonner and Dr Anand both did that...
but there was no one i met with personally and close up...
at the time i was in waiting rooms at surgeons offices, no one was
waiting who was post op that i could have met with...
i think a buddy system of names of post surgery patients who
are fully recovered and willing to meet with pre op patients would be
a great thing....i have heard and read other people considering fusion
say the same thing....how much it could help them with decision making.
in my case, i would want it to be someone fused to sacrum...

jess...and Sparky

susancook
06-04-2013, 04:26 AM
Ev, of course i would be willing to meet anyone
in NYC who had fusion to sacrum....
i would go into the city just for that, if need be...

surgeons put me in touch with post op patients on the phone...
Dr Lonner and Dr Anand both did that...
but there was no one i met with personally and close up...
at the time i was in waiting rooms at surgeons offices, no one was
waiting who was post op that i could have met with...
i think a buddy system of names of post surgery patients who
are fully recovered and willing to meet with pre op patients would be
a great thing....i have heard and read other people considering fusion
say the same thing....how much it could help them with decision making.
in my case, i would want it to be someone fused to sacrum...

jess...and Sparky

I did not meet anyone before surgery. except I talked w/ Gayle briefly in a waiting room. I should have asked her to get up and move, but did not think about it at the time. Irina told me about a woman that she met and her ability to move with a full fusion. For me, it was the progressive disability that I had and the fact that I was so greatly limited in my ability to have a normal life, that and the pain. I am 2.5 months postop and thrilled with my lack of pain. Sure, my right leg is a little bit weak and my L buttocks hurts sometimes....but hey, it beats lying on a couch all day. There are SO MANY outcomes that could have happened to me that did not. Yes, I wanted a lot of mobility and I think that I have it although I have not tried most movements. If you are going for perfection, it probably isn't there or will not be there with surgery.
Susan

Susie*Bee
06-04-2013, 08:33 AM
I also did not meet anyone with a successful surgery before or after my surgery. Life is just that way sometimes. Irina-- I still use a sock aid six years after-- it's second nature. Part of my problem is that one of my hips doesn't bend quite enough-- don't know if it's because of my arthritis or what. But, what the heck, it's ok. I'm totally used to it.

leahdragonfly
06-04-2013, 09:10 AM
Hi Susan,

you mentioned up thread that you have tested out a little bending and a little twisting...my strong advice to you is DON'T right now!!!!!

I understand how impatient you feel...I was very impatient with myself in recovery too, but it is simply not worth it to push your mobility limits now and find out later you compromised a solid fusion. I have posted before that I was hazy in my understanding of some of my restrictions, as I did not get clear instructions about my limitations that I recall (probably due to the post-op drugs). As you know I ended up with broken rods at L3 and L4 at 15 months post-op, and I will always wonder in the back of my mind if I did something to prevent a solid fusion. I will of course never know, but let me tell you, it REALLY sucked having to go through a major, 8 hour A/P revision. I am now about 16 months post the revision, doing very well, although I still feel sometimes like I'm waiting for the other shoe to drop. I think in time if all continues well I will be able to move beyond that.

And finally, to answer your question, I was able to wipe the normal way without any tools or help from day 1. I have flexible shoulders which helps. We are all so different!!

Take care, and please don't over do it.

jrnyc
06-04-2013, 11:04 AM
i am a very visual person...always have been....
i can hear something and not get it...
but if i see it, it is done...i got it...
even better is movement....muscle memory works for me, too....
if i see and do something, it will stick with me always.

so i need to see things...
not just hear about them on the phone...
i need to see them happening in front of me...
it would make a permanent lasting impression on my brain and
psyche....probably an emotional impact as well.
that is the reason i want to meet a "post op to sacrum" person...
for others, i am sure there are other good reasons as well...
i have heard it from almost every "no op yet" person i speak or
write to....
SEEING...watching... the mobility level would be most helpful.

jess....and Sparky

Irina
06-04-2013, 01:16 PM
Jess, if you are ever in Northern California, I'd be more than happy to meet with you. I understand how you feel - I met a woman my age fused to sacrum before the surgery, and it was the most convincing experience.

twistedRN
06-04-2013, 05:14 PM
Hi Everyone,
It has been a long time since I visited the forum but it is great to see how much support you all continue to give to fellow scolis out there!

As far as the answers to your questions, I was fused T2 to the sacrum with pelvic fixation and am now almost 15 months postop. I would rate my adaptation to my decreased mobility at about a 7-8 right now. I never did wear a brace, either preop or postop, although I often feel like I am wearing one now! I have adapted to getting things off the floor by doing deep knee lunges keeping my back straight. I am now able to tie my shoes either by putting my foot on something high (like a bed) or putting one foot on the opposite knee, although that is still very tight for me. I can shave my legs normally except I am unable to reach the outside of my left lower leg for some reason. I haven't used any of the assistive devices since about month 6 or so, although I do still use my grabbers because it is so much easier than doing those deep lunges! I have been doing PT for a few months now (3x a week) for decreased shoulder ROM related to my shoulder blades not moving well on my torso / fused thoracic spine. It is definitely helping with the ROM in both shoulder joints and also the tightness I feel across my mid back.

One of my biggest issues is driving for two reasons : 1. my head is pushed forward/down when it hits the headrest if I try to sit in the seat with no pillow behind me....anyone else have this happen?? It is quite frustrating! 2. When I try to merge into a lane, coming from the right, it is very difficult to turn enough to see the cars coming at me from the left (especially since I am trying to preserve what few neck vertebrae that I have that are still unfused!). I usually try to not pull up as far into the intersection so that I can see the cars on the left easier before I reach it.
Anyhow, hope that answered your question! I hope to be a good solid 9 on your scale this time next year!

jrnyc
06-04-2013, 05:37 PM
hi Irina
THANK YOU so much for the offer....
i would definitely take you up on it if i am ever out
there...
sending you PM

jess...and Sparky

Doodles
06-04-2013, 06:44 PM
OK, I guess I will respond. Ed did a lot of encouraging to get us on here! Plus, after reading Twisted RN I can say ditto to almost her whole post & save a lot of time. I'm 4 years out now. I have all of those same issues except 2-- I don't use my grabber anymore although there are times I could. Also not a real problem with shoulder muscles. However, I have a lot of pain/burning sensation in left shoulder and neck. That seems to be getting worse all the time. Her driving issues and headrest issues are mine also. I see we are both T2 to pelvis so perhaps that's why we are similar. Getting in and out of cars (except my Prius which works perfectly for me) is still a problem. Especially when they sit low. It's very hard to close the door once you are in also. I would love to go back to yoga, etc. but getting down on the floor and doing any of those moves are virtually impossible so I am fine with doing zumba--I really like that.
I guess just considering mobility I'd say 7-8 too. Over the last few days I'd been reading the responses and those were the numbers I kept coming up with. Then I saw Twisted had the same and we were very close in our difficulties. Oh, I also don't lunge so much as just go down on one knee to get to the floor. And I did not wear a brace. Janet

jrnyc
06-04-2013, 07:21 PM
Janet....question...
can you use a cane to grab the car door and get the door closer
to you, then slam the door closed...that way you would not be
reaching or stretching out your arm...

just a thought....
jess...and Sparky

Irina
06-04-2013, 08:24 PM
Janet and twistedRN,

I have the same issue driving - headrest pushing my head forward. It's even more annoying when I am a passenger in a car. I am fused T6 to sacrum. I remember reading somewhere that some people reversed the head rest - have not tried that yet.

jackieg412
06-04-2013, 08:46 PM
That Is an interesting Idea--to change the headrest. I have all of the same issues--but I have a Pt criuser for a car. I am short and this is the car that is easiest to get in or out of. I grab the seatbelt and the door on the way in,that makes it a little easier. Also seeing over my left shoulder is impossible.I am fused t2-pelvis and have c5,6,7 fused as well. I don't know if it is the neck or spine that is the problem.I limit were I drive--I need to avoid any fast traffic from the left. I also hold the car straight as I can at stops to help with the over the left side. I spent a long time trying to convince a PT about this problem--I am happy that someone else understands

titaniumed
06-04-2013, 09:53 PM
Guys

It just isn’t worth it taking a ride in any car if the seat isn’t set right....I refuse to do this. The headrest should not be touching the back of your head. It should be slightly behind but not touching or certainly not pushing your head forward. Asking someone for help is easy, not asking can be painful.

The headrest is there for whiplash protection. If someone slams into the rear of the car, the headrest saves your neck from major damage. Turning it around or removing it is not a good idea since its technically a safety device.

If the headrest cannot be set, take the car to the dealer, and have them address it. They should not charge you for this.

Ed

Doodles
06-04-2013, 11:28 PM
Jess--Thanks that is an idea. It is only a problem when I'm in other people's cars! Mine is great. My husband's isn't bad but can't get the door shut from passenger side. I'll have to try that.
Ed--I wonder if they could fix that. Once again it's other cars mostly. I can put my own seat back but it's not as comfortable. In the backseat of cars is the worst. You can't adjust the seat. Janet

Susie*Bee
06-05-2013, 12:52 PM
I guess some things others have listed I just consider part of life-- I use grabbers sometimes, but no biggie, I use sock aides, no biggie either. Part of it is arthritis in hips, part that I have a short torso and long legs-- making it a long reach down to my feet. Again, not a big deal. You move on and adjust. And I am a wimp and get slip-on shoes... even my New Balance ones. Regarding headrests. Most interesting! Our Chrysler van is fine with me, but both my kids' Hyundai vehicles (one sedan and one SUV) do that "push your head forward" business. I have found that I take a sweater or something similar and wad it up and put it behind the small of my back enough so that I stick out more and that helps immensely. I also have had that problem on some airlines. I also am fused to T2.

Doodles
06-05-2013, 02:32 PM
I guess I'm just wimpy! I am just so amazed when I hear about some of the things people can do AFTER surgery. Yoga for instance. Just can't imagine. I even tried it once. I might as well have been a flipped over turtle! Not that I need to do that--it just makes me wonder about the everyday stuff. I can get along fine though.
I was trying to just respond to the mobility issue and not other ones, but I'm afraid the cosmetic and general-come-and go pain issues cloud my 7/8 number. And...I'd still have to do it all over again because I couldn't have gone on the way I was. Yes, I always have a pillow in both cars and try to find the right spot to make it feel better but still pretty tricky. But it does help. I would love to say 10! Janet

Susie*Bee
06-05-2013, 03:44 PM
Janet-- I think Ed wanted us to say how well we have ADAPTED, not if we have gotten back to doing everything we once did or once wished we could do. At least that's how I took it. I have "adapted" well, and am quite content, but I can't do a lot of things some of these others can do. We are probably in the same boat. I've accepted where I am, and it sounds like you have too. Stabilized, no pain almost all of the time, but definitely have a lot of things I can no longer do. How does Robert Frost's poem go? Anyway, I took the other path and am glad of it, even with limitations. Oh, right-- those aren't quite his words. (smile)

twistedRN
06-05-2013, 05:08 PM
Hi Again Everyone,
Ed, I completely agree about the safety issue with the headrest and was thinking lots about it today....and had a brainwave! I have tried turning the headrest around etc but today decided to try using the headrests from my husband's car (we both drive Hondas, his is a CR-V and mine is a Pilot) - and it WORKED!! His headrests are much thinner and smaller and aren't as "puffy" or rounded as mine and they fit perfectly in the Pilot's headrest slots. So my advice to others with the same problem is to maybe try a less expensive version of the same car company and see if their headrest doesn't push your head forward! VOILA!
Also, about not being able to reach the car door to close it - I initially had a knotted tie around the armrest to pull the door in but now find I don't need it.
Thanks for the thread, Ed - now that the headrest situation is better, maybe my adaptive level is more like a solid 8?? :)
Suzanne

susancook
06-05-2013, 08:31 PM
Hi Susan,

you mentioned up thread that you have tested out a little bending and a little twisting...my strong advice to you is DON'T right now!!!!!

I understand how impatient you feel...I was very impatient with myself in recovery too, but it is simply not worth it to push your mobility limits now and find out later you compromised a solid fusion. I have posted before that I was hazy in my understanding of some of my restrictions, as I did not get clear instructions about my limitations that I recall (probably due to the post-op drugs). As you know I ended up with broken rods at L3 and L4 at 15 months post-op, and I will always wonder in the back of my mind if I did something to prevent a solid fusion. I will of course never know, but let me tell you, it REALLY sucked having to go through a major, 8 hour A/P revision. I am now about 16 months post the revision, doing very well, although I still feel sometimes like I'm waiting for the other shoe to drop. I think in time if all continues well I will be able to move beyond that.

And finally, to answer your question, I was able to wipe the normal way without any tools or help from day 1. I have flexible shoulders which helps. We are all so different!!

Take care, and please don't over do it.

Thanks Gayle....you are right. I will be less adventurous in testing my limits. As much as I have a love/hate relationship with my brace, it does constantly remind me to be careful. It must be over 100 degrees inside my brace right now, really sweaty. Susan

rockycarm
06-06-2013, 07:07 PM
Hi Everyone,
It has been a long time since I visited the forum but it is great to see how much support you all continue to give to fellow scolis out there!

As far as the answers to your questions, I was fused T2 to the sacrum with pelvic fixation and am now almost 15 months postop. I would rate my adaptation to my decreased mobility at about a 7-8 right now. I never did wear a brace, either preop or postop, although I often feel like I am wearing one now! I have adapted to getting things off the floor by doing deep knee lunges keeping my back straight. I am now able to tie my shoes either by putting my foot on something high (like a bed) or putting one foot on the opposite knee, although that is still very tight for me. I can shave my legs normally except I am unable to reach the outside of my left lower leg for some reason. I haven't used any of the assistive devices since about month 6 or so, although I do still use my grabbers because it is so much easier than doing those deep lunges! I have been doing PT for a few months now (3x a week) for decreased shoulder ROM related to my shoulder blades not moving well on my torso / fused thoracic spine. It is definitely helping with the ROM in both shoulder joints and also the tightness I feel across my mid back.

One of my biggest issues is driving for two reasons : 1. my head is pushed forward/down when it hits the headrest if I try to sit in the seat with no pillow behind me....anyone else have this happen?? It is quite frustrating! 2. When I try to merge into a lane, coming from the right, it is very difficult to turn enough to see the cars coming at me from the left (especially since I am trying to preserve what few neck vertebrae that I have that are still unfused!). I usually try to not pull up as far into the intersection so that I can see the cars on the left easier before I reach it.
Anyhow, hope that answered your question! I hope to be a good solid 9 on your scale this time next year!


Hi, I just wanted to tell you that I too had similar difficulties when I started driving. My head was pushed forward and I felt like I was going to hit the ceiling :) (murano) I didn't however have the problem in my daughter's car (highlander). I am 13 months post op T9-S1 with pelvic fixation and things are much better now. My head is not protruding forward anymore and it is easier to turn - that was a challenge. I can only assume too that yours might be a little bit more difficult because you are fused from t2 down. I went to P/T for nine months and it helped me tremendously. Be safe and look forward to hearing when you are a 9.

ADMoul
06-10-2013, 08:25 PM
Just wanted to say hi to everyone. It's been quite a while since I've been on the forum and I see lots of posts from familiar names. I am a few months past 3 yrs. post-op, fused T-4 to sacrum and had a brace for about 3 months because some of my hardware wasn't completed due to surgical complications. For me, I would have to put myself in the 9-10 category. Like Debbie, there's nothing I can't do that I want to do. Yes, I tie my shoes by putting my leg up on my knee and can trim my toenails if needed but pedicures are so much more fun. I am in my second year of working with a trainer at the gym who has me doing just about anything that doesn't involve twisting or lying on my stomach to lift any weight. The worst thing is trying to get my feet out of the rowing machine because I can't really lean forward to open the straps.:) I still have a little trouble getting out of a car that's really low. Despite my efforts at the gym, I think there are some muscles that are just never going to be what they once were. Other than that, no issues. I only do "old fogie" amusement park rides anymore like the ferris wheel but who cares? My mobility would have been far more limited at this stage in the game had I not done the surgery.
Anne (in my 3rd day of retirement after 34 years in public school music education!!)

JenniferG
06-10-2013, 10:01 PM
Congratulations on your well earned retirement Anne! It's great to hear you're doing so well at three years post op.

golfnut
06-10-2013, 10:01 PM
Anne,
You sound so good. Congratulations on your retirement. I retired 8 years ago after 34 years of teaching second grade and kindergarten. I still substitute but a little less each year as I keep finding other things to do. I'm with you on the pedicures and enjoy every minute.

jrnyc
06-10-2013, 11:40 PM
congratulations on retirement, Anne
i left after 25 years with NYC DOE...but i left due to pain...

after 34 years, it might take you awhile to sleep later...
but i know you will enjoy retirement....

jess...and Sparky

Doodles
06-11-2013, 11:49 PM
Anne--
Congratulations on your retirement! I retired in 08 after 35 years of teaching English--mostly in middle school. I so love retirement and truly hope it's great for you too. Janet

susancook
06-12-2013, 04:20 AM
Susan,
I know it's hard to be patient, but when you look at the big picture of a fused, straight spine for the rest of your life, it's so worth it. I would advise not bending or twisting at all for many more months. This is a crucial time for your vertebrae to fuse, so be very careful. I used the extender for wiping for probably 6 months or more and the razor with the long handle for a year. Look at the video in my signature if you want to see my mobility at 15 months. I couldn't imagine being able to do that during my first year. Now at over two years post-op, I know my swing shows more speed and a bigger turn. I don't have any pain during or after golf. You will be amazed at the improvements even after two years.

Thanks. Part of my testing and trying to move in various direction, is that preop I had no idea really what postop looked like. I kind of thought that I would be stiff like I had a broomstick inserted into my back. I honestly thought that a titanium rod was like a stiff broomstick. So, I am so pleasantly surprised! It would have helped if I had met some woman preop with my same fusion. To relieve your concern, I barely move my back at all, just a little bit in all directions.....most of my moving is the minimal movements that I make during my brief times out of the brace. Honest.....I just want this surgery once.
Susan

susancook
06-12-2013, 04:34 AM
Having read this thread with a lot of interest, like Irina, I was reassured that mobility will get better.

I see 2 questions really: 1). What is your level of mobility compared to preop?
2). What percentage of things that you really want to do bother you that you cannot do or need to do in a similar or different way?

While some people give a less than 10, they go on to say, that it really doesn't bother them that they cannot do something or another. If you gave yourself a 9 because you couldn't put on socks, but then said that that the inability to put on socks bothered you SO much, then it is important. If on the other hand, you say, that using the sock aid was, hey, no big deal and your just put it into your routine without even thinking and hey....who cares anyway about the sock assist? To me, that is the more important question.

Susan

titaniumed
06-12-2013, 10:01 PM
Susan

I think that “most” of us that are 1 yr post op or more have stopped using a sock installer.....I was around 8 months when I stopped.

I used to be able to bend over and “palm” the floor.....I cant do that anymore after surgery and that’s fine. I have adapted.

I should have titled this thread “Adapting to limited mobility, for decision making” I guess I could go and change it....Its for those pondering a surgical decision. Life after fusion is not the end of the world....but preparing for complications, and expecting the best is the mindset I adopted.

Now, the people that have pain and are hurting after a long recovery because something is WRONG, should post in Linda’s thread “I’m sorry I had surgery”. This is another subject matter.....

I hope that these threads help others in the decision making process.....

One thing I have had problems with is the motorcycle thing......I used to ride supermoto years ago and realize that its nuts and have quit and sort of adapted.....I don’t know if I will ever get over this....Here is a sample. I sold my “hot” bikes during my recovery.

200MPH in the rain. Isle of Man TT.
http://www.youtube.com/watch?v=LU-ynRoqDEs

Another example of adapting....mental and physical adaptation.

“Conditions very iffy, but they are going anyway”

Sound familiar?

Ed

tae_tap
06-13-2013, 08:44 AM
Ed, I wish this thread had been there prior to my surgery for I may have skipped the short fusion and bit the bullet correcting both curves but I was so wrapped up in the idea of losing too much mobility. I was worried that I would not be able to adapt, but now I realize I was and am strong enough.

Now on the topic of motorcycles, you can always go to riding a trike. I used to call them an old man bike, but have changed my mind since surgery (wink wink). It is now a safer option for bike lovers.

Tamena

Susie*Bee
06-13-2013, 09:05 AM
I am the culprit with the sock aid. I think there is something about my right hip- it just won't bend enough- and the fact that I have a short torso and long legs. It's just a l-o-n-g reach. Sorry! Kudos to the rest of you. (smile)

Confusedmom
06-13-2013, 11:30 PM
Thanks. Part of my testing and trying to move in various direction, is that preop I had no idea really what postop looked like. I kind of thought that I would be stiff like I had a broomstick inserted into my back. I honestly thought that a titanium rod was like a stiff broomstick. So, I am so pleasantly surprised! It would have helped if I had met some woman preop with my same fusion. To relieve your concern, I barely move my back at all, just a little bit in all directions.....most of my moving is the minimal movements that I make during my brief times out of the brace. Honest.....I just want this surgery once.
Susan

So you don't feel like you have a broomstick up there? I totally do!!! In fact, it's not just a broomstick, but a broomstick with metal ribs coming out of it!!! I'm not complaining. I expected it to be this way, and for me it is. Feels like a metal corset inside me. But it's oddly comforting in a way because I feel so stable.

As to your question of what we can't do that really bothers us. I don't like that I can't just squirm around in bed and pull the covers up. I either have to have my hubby pull them up, or I have to get out of bed and pull them up. There are other reasons I don't like feeling like a turtle on my back in bed, as well. Part of this may be because we have a tempurpedic and I sink in. I don't know.

susancook
06-14-2013, 09:10 AM
So you don't feel like you have a broomstick up there? I totally do!!! In fact, it's not just a broomstick, but a broomstick with metal ribs coming out of it!!! I'm not complaining. I expected it to be this way, and for me it is. Feels like a metal corset inside me. But it's oddly comforting in a way because I feel so stable.

As to your question of what we can't do that really bothers us. I don't like that I can't just squirm around in bed and pull the covers up. I either have to have my hubby pull them up, or I have to get out of bed and pull them up. There are other reasons I don't like feeling like a turtle on my back in bed, as well. Part of this may be because we have a tempurpedic and I sink in. I don't know.

I may feel differently about the "broomstick" feeling once I stop wearing the brace. It is interesting that as much as I complain [b....] about my brace, it is comforting to me as I know that I will not harm the hardware with inadvertent twisting/bending when I wear it. I also feel a lot of back tightness....maybe the turtle phenomena that you describe.

As to your comments about bed issues, I agree with you. We have a king bed, but when I try to turn over, pillow between my legs and log rolling, it is like there is a moderate earthquake in bed. It takes me about 10 moves to finally settle in [and unwrap all of the sheets/blankets, etc] and of course it wakes up my husband. Then, I frequently have to ask him to pull up my covers. We do not heat our home very much, so I have multiple layers of blankets and a quilt, all to get tangled.

Susan

titaniumed
06-14-2013, 11:28 PM
Ahhh.....the bed discussion. Adapting to dealing with the bed and sleeping is a major issue after scoliosis surgery, but it does get better.....

Getting in and setting your hips down in the right spot before laying down is critical. I don’t know how many times I would do this, then lay down to find out that I was too far up on the bed and my head would hit the headboard. Wow! Then I would have to log roll on an angle to get my head off the headboard.....and eventually try to log roll completely out of bed to make another attempt. This was a major painful event and it happened quite a few times and with a broken shoulder! If you logroll out with your head near the edge of the bed and your feet in the center of the bed, it’s a disaster. This is where it gets tricky. Man-o-man!

I then would set my hips half way down the bed before laying down again and my head would be 2 feet from the headboard with my feet hanging off the end of the bed.....What are you going to do? I would be lucky to get an hour of sleep.

Things did improve, and now can move up and down the bed.....it took me around a year to get this perfected.

For those that do tough surgeries, its almost better to sleep alone.....Any disturbances are just dreadful, and sleep is so needed......

Don’t forget the foam! Latex foam topper for the bed, 2-4 inches thick.

The broomstick feeling does go away. It takes a while, and mind diversion helps. Transfer your thoughts! Dream about things other than your back.

Walk, walk, walk, talk, talk, talk but not about your back or your surgery.....people also get tired of hearing about it.

Ed

Irina
06-14-2013, 11:54 PM
About the broomstick feeling... I like that feeling. I would not describe it as a broomstick though. Before the surgery, I felt that my torso was pulled to the right, left hip to left, ribs rubbing against the pelvic bone - the works. The feeling that I have today is that some internal strength is keeping me straight and tall. I don't feel the hardware, just feel STRAIGHT. I would never trade today's feeling for that old feeling of tearing my bones apart, and loss of flexibility is a reasonable tradeoff.

the_baroness
07-19-2013, 02:04 PM
I think the limitation I am feeling most keenly right now one month post-op, is how to hug or kiss my friends who come to visit me. Particularly friends who are shorter than me! I can't lean down to kiss them hello or goodbye! I'm starved for human interaction right now here at home. I love my cats, but I think I'm spending a bit too much time with them!

Has anyone else experienced this? (Not the part about the cats, the part about having trouble hugging or kissing!) My husband is bald, and for the almost 20 years we've been together, I've loved leaning down to kiss his bald head when he is sitting down. And now I can't do that. We're trying to revise the procedure so he leans towards me when I'm going in for the kiss. I'm glad I have a husband that will work with me on this. But now I just need to get all my friends to help me come up with a revised procedure so I can hug and kiss them. I guess this is sort of a trivial issue. The other limitations of T10-pelvis fusion are just now beginning to reveal themselves to me. (E.g., loading and unloading the dishwasher, etc.) And I don't care if I have to use the sock tool for the rest of my life. But I want to be able to hug people properly again some day.

Irina
07-19-2013, 02:35 PM
I think the limitation I am feeling most keenly right now one month post-op, is how to hug or kiss my friends who come to visit me. Particularly friends who are shorter than me! I can't lean down to kiss them hello or goodbye! I'm starved for human interaction right now here at home. I love my cats, but I think I'm spending a bit too much time with them!

Has anyone else experienced this? (Not the part about the cats, the part about having trouble hugging or kissing!) My husband is bald, and for the almost 20 years we've been together, I've loved leaning down to kiss his bald head when he is sitting down. And now I can't do that. We're trying to revise the procedure so he leans towards me when I'm going in for the kiss. I'm glad I have a husband that will work with me on this. But now I just need to get all my friends to help me come up with a revised procedure so I can hug and kiss them. I guess this is sort of a trivial issue. The other limitations of T10-pelvis fusion are just now beginning to reveal themselves to me. (E.g., loading and unloading the dishwasher, etc.) And I don't care if I have to use the sock tool for the rest of my life. But I want to be able to hug people properly again some day.

I tell my friends to jump. Seriously. I squat a little and have them stay on their toes :-) I am 5'9"

golfnut
07-19-2013, 04:12 PM
Just keep in mind that many of these restrictions and limitations are temporary. I think that is why I never got down at all about anything I wasn't allowed to do (no golfing for a year comes to mind-imagine that)

lray
07-19-2013, 07:33 PM
Wow, I have not been on this forum for a long time, I guess that is a good thing?!

It's been 2 years and 9 months since my surgery, fused T2-L3, and I would give myself a 7/10 as far as mobility goes. Swimming is not as easy (can't swim breast stroke well, must do back stroke or side stroke). I still bang my head ocassionally. We have a boat now but I've been advised to NOT water ski. I tried riding on an inflatable tube but the bouncing hurt my neck so I just enjoy myself INSIDE the boat! I feel like a robot sometimes in the way I walk and with the stiffness. I also have that turtle on the back in bed syndrome too...have to roll to my side and I have to wake up in order to roll over. Oh well.

My scoliosis related pain is GONE! Now it's just my neck and lumbar.

I did not wear a brace after surgery.

titaniumed
07-19-2013, 10:43 PM
Hi Laurie, Glad to see your doing ok.

Be careful in the boats......

I waterskied once before my surgeries in 1998 and had no problem with skiing, but hanging onto that rope just completely trashed my back, and it only took about 4 minutes. I was also on an island in Canada and had to hunt out a Chiro in Ontario who essentially was afraid to touch me. He did help me, but I have to say I never waterskied again.

I have herniated cervical discs now....so protecting my neck is now a priority.

Ed

Doreen1
07-20-2013, 02:31 PM
I squat to hug and kiss everyone, I'm 5'10".

Tableone
09-04-2013, 02:54 AM
I'm sure everyone is different, and people's body's have different levels of mobility after surgery, but here's how it is for me today:

I was fused T2 to L3 twenty-five years ago. I have never gotten used to the limited mobility/flexibility. I still have to sit up in bed in order to turn over. I still can't back my car up more than a few feet because I can't twist enough. Many times, I have to get a stranger to do it for me as I'm afraid I will crash into something. Every time I change lanes on the freeway, I realize how much I have to turn my head because my spine can't twist properly. Cutting my toenails is painful, especially as I get older. Getting in and out of other people's cars is still painful and difficult.

Things I used to do which I can no longer do:

Swim. I was an avid swimmer. After surgery, I could not twist my body enough to get my head up for air in the forward crawl. Since my spine wouldn't arch, I couldn't do the breast stroke, either.
Dance. I feel awkward on the dance floor as I can't move my hips side to side. I look stiff, and I am stiff! Also, since I can't arch my back many ballroom moves don't look right.
Look at the sky or the stars. When I stand up, I can't really look at the sky in the same way as everyone else because my spine does not bend, and my head/neck only goes back so far. If I really want to look at the sky, I have to lie flat on the ground.
Sea or River Kayak: A few years back, I wanted to take it up. I took several lessons, but as I couldn't move my hips as instructed to steer and paddle the boat, it was almost impossible. Doing a kayak "roll," was also impossible. The hardest thing was trying to explain to all the other kayakers. People just don't understand when you say you have a completely fused spine. They kept saying, "You're not moving your hips!" In the end, I had to give it up.
Do sit-ups.
Lie on my stomach and read a book.
Use any kind of stomach or ab cruncher machine at the gym; it require your spine to bend.
Climb trees or climb over a fence. I can't get my legs up high enough.
Run. Can't do it because of the impact.

I can't lie on my stomach on a narrow table, like an operating room table. Had an epidural recently and the OR staff just didn't get it. The table was not wide enough for me to log roll over onto my stomach.

I attempted to be very active over the years because it made me spine feel "looser," when I was active. Finally, I took up hiking which I loved, and which I could do. I enjoyed that for several years, but then I developed arthritis in both knees, so I can't do it anymore. I also had success with weight-lifting using machines with proper back support and did that until my lower, un-fused spine collapsed from the long fusion.

I am now thinking of taking up sailing in a sailing club, as that involves mostly standing, I think. If it weren't for my knees, I'd still be hiking and walking, too.

Thanks. Best wishes to all.

Confusedmom
09-06-2013, 11:16 PM
Tableone,

Thank you for posting. I really appreciate hearing from people who have been fused a long time, as it seems like there is so little information about what happens over time with a fused spine.

I have many, but not all, of the same limitations you have, since I'm fused T4-S1. A few thoughts. Dance if you want to. Who cares what it looks like if you're having fun? I still dance and have literally no movement in my hips.

Two, I am so impressed at all the different activities you have tried. And I agree, activity does make my back feel looser. If I skip exercise for a few days, bam. The muscle spasms are back.

Last, I wonder if you would be a candidate to have your fusion extended? It could possible deal with what I am assuming is pain that made you stop lifting weights. Just a thought.

I have enjoyed floating on my back in the pool, and also back stroke. I like walking on a treadmill, but I am also frustrated by not being able to walk as fast as pre-op.

Thanks again for all of you insight and honesty.

Evelyn

jrnyc
09-07-2013, 03:51 AM
Ev...i thought the same...

Tableone...i read your other forum posts...
i am so sorry for the pain you are in...and for how upset you are about
the things you can no longer do...
you mention on one of your other posts that your lower spine has "collapsed" so i am wondering, as Ev mentioned,
whether any surgeon has talked to you about extending your fusion
to sacrum...Linda Racine had that done...over a year ago, going on two
years...i think she is pleased with her results, if you wanted someone
to write to about it...many others on forum have also had their fusions
extended...i do not know if that is something you would consider.

i have not had surgery...and cannot do many of the things you mentioned...i could do many things before my pain got bad.

i met with Ev on Labor Day, and i was so happy to see how well she
looks at 18 months post op...she said she feels good, too.

jess...and Sparky

mkatz
05-29-2014, 04:02 PM
One thing I have had problems with is the motorcycle thing......I used to ride supermoto years ago and realize that its nuts and have quit and sort of adapted.....I don’t know if I will ever get over this....Here is a sample. I sold my “hot” bikes during my recovery.

200MPH in the rain. Isle of Man TT.
http://www.youtube.com/watch?v=LU-ynRoqDEs

Another example of adapting....mental and physical adaptation.

“Conditions very iffy, but they are going anyway”

Sound familiar?

Ed

One thing i miss is riding (at a much lower, noncompetitive level than you have done). I expect to be fixed T4-S1 with pelvic fixation. Given that, is returning to MC riding "realistic"?

susancook
05-29-2014, 08:30 PM
Mkatz, whatever Ed says, probably water it down for a normal "thrill seeker". Did you see his skiing video? I rest my case ;+]
Susan

titaniumed
05-29-2014, 08:55 PM
I never actually competed in supermoto which is different than the TT race, but still you get the idea. I should have posted a supermoto race video instead. That’s pavement and dirt with jumps combined.

Riding supermoto exerts high “G” forces and I did have problems "before”my surgeries with back pain. It all depends on how hard you ride.

Normal motorcycling is fine, its actually better because I can sit for longer periods now riding street. I have a KLR-250 that I hang off the back of my RV for transportation purposes while camping. Big difference between a KTM MXC-525 and a KLR-250, like the rabbit and the tortoise. This was done on purpose to slow me down. My neighbors got concerned when I was out in the garage revving the KTM when I was 6 weeks post. I sold it and cried for months.

Crashing is always something that we try to avoid, crashing after scoliosis surgery increases the fear factor since it wouldn’t entail just road rash or a broken limb, cracking a fusion would probably require more spine surgery....

I see your getting ready.....

There are not many male members so if you want to chat on the phone, PM me.

Ed